For patient and caregiver: Observations from the field

I have listened to many LVAD patients and caregivers describe the way life is for them; their reality. From these conversations I have been made aware of at least four important lessons about life:

The world does not guarantee ?easy.?

The world is not predictable.

The world is filled with stuff that?s just not fair.

The world does (sometimes) offer second chances.

Living with an LVAD requires a long commitment in the same direction. As I reflected on these conversations with patients I was drawn to a story about a rather unique and brave fellow; Jim Huebner. I don?t know a lot about Mr. Huebner other than the fact that he likes climbing mountains. Below is one of his stories.

At age fifty Jim Huebner decided he wanted to climb Mount McKinley; all 20,000 feet. In most climbing expeditions only 40 percent of those who start the climb ever reach the top. When climbing McKinley, temperatures can range from 90 degrees to ?50 degrees Fahrenheit. Winds will gust upwards to 100 miles per hour. Each climber will carry 60 to 90 pounds of equipment each day, all day. Many climbers experience extreme dehydration, fatigue, irritability, claustrophobia, and even panic. With this in mind, Mr. Huebner chose to start the climb and reached the summit . . . at the young age of 50. I am sure he was mindful of but not thwarted by life-threatening conditions and the odds of success.

When asked what enabled him to finish the climb he offered ?six immutable laws of mountaineering.? They are: (1) Climb with Passion, (2) No Guts, no Glory, (3) Expect Dead Ends, (4) Never Look Where You Don?t Want to Go, (5) Never Turn Your Back on Your Partner, (6) There?s Always Room on the Rope for a Person with Honor (Williams, 1999).

Are any of these six laws of mountaineering transferable? Can a person facing the challenges associated with the implantation of a heart pump relate to any of these life principles learned from climbing really scary mountains? Perhaps there is only a slight parallel between climbing Mt. McKinley and learning to live with a VAD. For the sake of argument, I am going to suggest that Laws #1, #3, #4, and #5 apply to living with an LVAD.

Law #1: Climb with Passion. Learning to adjust to life on a heart pump is what a patient and caregiver do. Every day. You start at day one; at the bottom of the mountain looking up. Passion for life, for family, and God empowers you to climb. You choose to grab your gear and climb. Passion is an ?intense desire, ardent affection, and enthusiasm.? People with passion resist apathy.

Law #3: Expect Dead Ends. Oh boy! You know all about detours, don?t you? Sometimes VAD patients and caregivers tell me they feel stuck or paralyzed. As if they hit a wall or reached a dead end. If you can accept the fact that dead ends occur, you will view life as a realist. Not a pessimist but a realist. And this requires a whole lot of reframing. But framing enables you to acknowledge the presence of difficulties and hardship without buying into the notion that ?bad things always happen to me.?

Law #4: Never Look Where You Don?t Want to Go. This applies to everyone; VAD or no VAD. You know the places you don?t want to go; emotionally, spiritually, and relationally. You want balance and some sense of peace and control in your life. Again, reframing is critical when you discover you?re focused on where you don?t want to go or be instead of being focused on where you need to be. For those who climb: Don?t focus on down! For those living with an LVAD: Don?t focus on down!

Law #5: Never Turn Your Back on Your Partner. Perhaps there is no better example of a partnership than an LVAD patient and her caregiver. Certainly, guarding the partnership you have with your doctor, VAD coordinator, and other ancillary support personnel is crucial. But partnering with your partner is critical to surviving and thriving. Patient and caregiver, caregiver and patient. Finding yourself tied to someone else when climbing is not just a polite suggestion; it can mean life or death for those scaling the mountain. Never turn your back on your partner. Living with your partner in an understanding way will enable you to face crises, conflicts, and setbacks with a balanced and measured response.

For your climb, living with an LVAD, you will need a boat-load of courage. I hope that you will discover hope and strength as you apply these laws of mountaineering to your climb. I hope that you will be encouraged as you a stay the course; a long commitment in the same direction.